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Patient Stories

Savannah’s Story in honor of Rare Disease Day

I suffer from neuromyelitis optica, or NMO disease (sister of MS, also known as Devic syndrome) and chronic pain. I experienced my first attack… Read More

Bridget’s Story in honor of Rare Disease Day

I was diagnosed with afibrinogenemia when I was just one day old. The day I was born my heel sticks would not stop bleeding,… Read More

Ashlee’s Story in honor of Rare Disease Day

I was diagnosed with primary immunodeficiency when I was four years old. With primary immunodeficiency, the assumption is that “it’s just an infection” or that… Read More

NORD Debuts Rare Disease Day 2020 Video

This year, NORD has developed a brief video for Rare Disease Day featuring rare patients, caregivers and supporters sharing their thoughts on the importance of the day and relaying the rallying cry,… Read More

Why Rare Disease Day Is Important to Me, by Chris Madden

Does anyone ever think that they may have a rare disease? Well, I for one definitely didn’t. Here I was, having my annual check-up with my very astute dermatologist, who noticed an… Read More